This post is written by Kamil Fulwood Spagnoli, a Graduate Fellow at the Center for Health, Media & Policy. Ms. Fullwood Spagnoli is working towards her MS degree in Health Communications at Boston University. She plans to focus her health communication work on people living with disabilities and maternal child health. Her full bio is here.
I recently had a personal experience with the Early Intervention (E.I.) program in New York City that illustrated how populations that aren’t proficient at wading through health information may be at risk of receiving a lower quality of care.
The E.I. program was created by the federal government to provide evaluation and therapeutic services to children under the age of three who may not be meeting developmental milestones. There is a body of evidence that suggests addressing developmental delays sooner rather than later is highly effective in overcoming these delays.
I am a well educated and health literate person. Most times, I have the privilege of having ample time with few competing distractions when I schedule appointments for my children. For parents with survival concerns, spending countless hours in waiting rooms and then knowing how to argue and advocate to get the needed services for their child just may not be possible.
Parents advocate for their children daily. That’s our role. However, in this situation I found it necessary to strongly advocate and challenge the system through every step of the Early Intervention application process for my son. I had done my homework and knew what his needs were. I researched and knew the recommended therapies that he would benefit most from. Prepared and vocal, I was able to successfully advocate on his behalf and obtain services he needed.
Successful but exhausted it made me wonder about the experiences of other families who for many reasons including literacy, language and cultural barriers would find themselves unable to push to get what they need from this program in order to meet their child’s needs.
In a discussion with one of the program’s management officials I learned that the staff are not clinically trained. This person tried to defend his staff and explain to me that they are trained to match services to each child with current administrative guidelines and the reality of budgetary constraints.
This information made me question whether the needs of every child are being met equally and adequately. If parents are not health literate, unfamiliar with their rights or the ins and outs of how to work within this system, their child could suffer the consequences.
Then the next question is: how does this unequal treatment of therapeutic services impact these children’s health and education outcomes?
Many of the families who participate in the Early Intervention program have limited resources. Resources like education, communication skills and literacy are the building blocks of making informed health decisions. This is an important question for us to answer– are children enrolled in a federally created program to address their developmental needs at an early age experiencing differences in outcomes based on their parents’ health literacy and ability to advocate?
Parents and legal guardians, the most important people in their child’s health and developmental process should have access to health literacy and advocacy training at the beginning of the E.I. process. Then their children will be better served resulting in better overall outcomes from the services in the program.
Parents and legal guardians are key in the health and development of their children. In collaboration with their child’s health care and educational professionals, everyone is stronger in addressing that child’s health and development. They become even better equipped to understand what a child’s needs are and can advocate for them.
Parents who have these skills will then use them to enhance the lives of their families when facing other challenges.
Then we all win. The child, the family the community.